Off topic (but relevant) - how difficult it is to get fibromyalgia diagnosis overturned

Most people wouldn't feel elated, like I did yesterday, at being told they had arthritis in their upper back and neck - but I certainly did! I thought I'd relate my story here to demonstrate how difficult it is to get the NHS to change its mind - and how wonderful it feels when they do! :-) This is, of course, highly relevant when many of us have diagnoses of fibromyalgia and/or ME/CFS when it could be hypothyroidism. (and, sorry, this is a long post)

For almost 10 years I've been plagued by joint pain which has got progressively more severe - knees, feet/ankles, but mostly in the upper back/neck/shoulder area. It's got to the stage where the upper body pain is almost unbearable, especially at night as I wake in pain regularly. So, around 8 or so years ago, I got referred to a rheumatologist who did the 18 tender point test and told me I had fibromyalgia. At first, I believed him ... but then from talking to people on a fibro forum I realised that my pain didn't sound anything like theirs. I have no burning or tingling sensations and it feels deep within the joints/bones, not muscular.

But, of course, the doctors kept telling me, each time I went to them saying the pain was getting worse: "It's just your fibromyalgia". I even got referred to another rheumatologist recently and was absolutely appalled at her behaviour. I thought she was going to examine my shoulders as I believed that was what the GP had referred me for. Instead, she didn't want to know about my shoulder pain and restricted movement, she simply did the 18 tender point test again. She was quite surprised when only four of the 18 points actually hurt (the four on my shoulders, no less), said to me "Ah, but some people have a high pain threshold", and concluded that I did, indeed, have fibromyalgia. I even got a snooty-sounding letter from her saying that "she hoped that had put my mind at rest"!

Anyway, fast forward to yesterday. My GP surgery has now got a physio attached to the practice. I'd persuaded my GP that I really couldn't cope much longer with this pain and restricted movement in my shoulders, and the fact that it was keeping me awake all the time. After a two month wait, I got the appointment with the physio at the practice yesterday - and she has now confirmed, what I suspected all along, that my shoulder pain, along with upper back and neck pain, is all caused by osteoarthritis of the upper spine/neck. She was quite surprised that I was pleased that she's now given me this official diagnosis. I also now have a diagnosis of OA in my knees and ankles, so now EVERY SINGLE ONE of my pains, which were for so long put down to "just my fibromyalgia", have been explained by OA. I feel totally vindicated! :-)

It just goes to show how important it is to keep chipping away at the medical establishment if we know they've given a wrong diagnosis. I still feel pretty sure I have thyroid and, particularly, adrenal problems. I also have a diagnosis of ME/chronic fatigue going back to the 1990s, and the last couple of years has seen me get all sorts of other symptoms such as swelling, dry skin/eyes/hair, loss of body hair, constipation, etc, all of which point to hypothyroidism. But at least I now know what's causing my severe joint pain - and knowing the correct cause makes me feel so much more able to cope with it!

Keep fighting, folks - it's really worth it! :-)

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25 Replies

  • I must at some point tackle my CFS diagnosis. It has always been a joke and U.S. Even more so since the underlying conditions have been treated.

  • Absolutely! I actually think my CFS is really due to adrenal issues. I saw Dr P last year privately and he believes my adrenals are in a pretty bad state (though not bad enough for the NHS to do anything about it). I'm trying to address that at the moment.

    If you haven't already done so, I'd urge you to find out more about adrenal fatigue. Dr Wilson's book - Adrenal Fatigue: The 21st Century Stress Syndrome - is great.

  • May I ask, what was the result of your Vitamin D blood test?

  • I haven't had vit D tested for a while, but when I had it tested a few years ago at the GPs they said I was deficient and put me on their horrible chewy vit d/calcium tablets. I did my own research and ended up putting myself on a high dose of Higher Nature vit d for a while.

    Until recently, I've been on a maintenance dose of 1000 iu. However, I came off them recently when the pain got so much worse as I wasn't sure if I was overdoing it. My last test (done privately last year) showed the levels to be optimal - I thought I might have been taking too much since then. I need to have another test done to see what the levels are now before deciding to go back on 1000 iu again (or a different dose).

  • Hi Caroline,

    Thank you for replying, but I don't understand what you mean by "deficient" and "optimal".

    A lot of the symptoms that you described, could be attributed to chronically inadequate vitamin D levels and/or hypothyroidism, and/or inadequate magnesium, etc.

    It would be good if you could post your exact Vitamin D result, along with the lab's ref range and whether it was tested in NG or NMOL.

    Here's a post for you to look at -

  • Hi Londoninium - I don't have time to look up my old results right now I'm afraid as I'm busy getting packed to go away. I simply recall that, when my GP tested my vit d - around 5 or 6 years ago now, so I probably don't have the results anyway - they told me I was deficient. Then, they put me on those horrible chewy tabs - 400iu.

    But I found out from a fibro forum I was on at the time about the Vitamin D Council (I think that's what they're called) and their suggestion that we actually need a much higher dose. So I started to self-supplement with a higher dose (initially 5000iu, later 1000iu). When I got retested, first by the GP and later Blue Horizons (last year), it was in the range "optimal" - but I can't remember the exact figure. I continued to self supplement though, but stopped recently in case I'd overdone it and this might be what was causing my increased pain (which I now know to be due to the neck/spine arthritis, of course).

    I'm currently saving up to get some more tests done soon - vit d, iron, folate, magnesium, etc - so it's probably best to wait until I have up to date test results. :-)

  • Have you had thyroid blood tests recently? If so, what are your levels? I have OA too but the symptoms are greatly relieved when on adequate thyroid medication. I also had the fibromyalgia diagnosis! LB

  • Yes, I have. I posted them on here last week. I'll find the link and direct you towards it to save me having to type them out again. I got some very useful replies. I am taking NDT, as you'll see from the link when I find it, but probably not optimal at the moment. I need to see Dr P again privately (probably can't see him till Sept/Oct) to get this and my adrenals sorted out.

  • Here's that thread with my latest blood test results:

  • Hi, yes I see! I am on NDT as well and my levels are similar to yours - TSH suppressed, which is usual when on combined therapy and my T4 is mid range and T3 near the top of the range. I think this is optimal, and your symptoms as you suspect may be adrenal related or low B12 or D3 or iron. I have spent a couple of years working on my adrenals and am now much less anxious and levels are mostly within range. It hasn't made a difference to my OA though I'm afraid. Hope you get some useful replies. LB

  • Yes, that's the way I was thinking too. I'm working on it all but it takes such a long time!

  • Hi

    I have exactly the same symptoms as yours and can understand your delight.

    I was diagnosed with fibromyalgia along with hypermobility syndrome (what some people refer to as double jointedness) which confirmed my own diagnosis, however I continued to experience extreme pain in my neck and shoulders especially at night. I felt that was not explained by the fibromyalgia diagnosis so asked for referral back to the rheumatologist who sent me for a CAT scan which confirmed that I have arthritis in discs C3/4 and C5/6/7. Like you I was really pleased as it is good to understand the precise cause of the more extreme pain and to know it is not all in my mind although i do get pain at most of the typical fibromylagia trigger points so presumably have both. You might get the arthritis diagnosis confirmed by a scan as then it will be a formal diagnosis which may be useful in future.

    I find the neck and shoulder pain the most difficult thing to live with. I go to sleep in pain, wake in pain, and often feel as exhausted when I wake as I was before sleeping, presumably because pain disturbs my sleep. I do not have extreme stiffness apart from sometimes first thing and that is definitely better on very warm and sunny days.

    My GP has prescribed 20mg Duloxetine and also Vitamin D which I have been taking for some months but I didn't realise the Duloxetine was to be taken twice daily until a follow up appointment last week. Since then I have begun taking a second tablet during the evening but last night I woke with sleep paralysis which was frightening and exhausting - I used to have regular night terrors years ago and don't want them to begin again so will go back to one a day.

    I also have the same symptoms as you which point to hypothyroidism, along with recurrent flu-like symptoms and swollen glands in my neck. I feel that if I go back to my GP for yet more tests they will think me a neurotic woman as my bloods have just been done and have come back 'normal' so I am considering doing one of the thyroid function tests that can be done at home. Have you done anything to check your thyroid function? Most of the time I feel run down and generally unwell and sometimes I feel really ill and yet I look reasonably well and feel I will not be taken seriously. I've been googling to find a local endocrinologist who I might see privately but the only ones are of a nationality with whom I do not feel comfortable due to being reminded of childhood abuse. I had hoped there might be a woman specialist locally but sadly there is not and so I feel in a catch 22 situation - see the GP and risk being thought neurotic or see one of the specialists and risk feeling very uncomfortable and perhaps worse! I find it so exhausting, just trying to get symptoms listened to and understood.


  • Hi Sue - your symptoms sound almost exactly the same as mine! I've seen Dr P privately (have a look round the T-UK and also TPA site if you're not familiar with him). The NHS didn't want to know about me once my TSH test came back "normal". I've been having my own tests done privately through Blue Horizons/Spire Hospital, and am self-treating with NDT. Things aren't going entirely to plan though (my adrenals are a problem too) and I need to go back to see Dr P again when I can get an appointment with him.

    Good luck to you - whether you decide to brave the NHS or go private!

  • Caroline c57, Yes I believe we know our own bodies better and is so frustrating when the experts tell you they know better. But there are some good listening doctors and they are worth their weight in gold. Hope you now get all the proper help you need now.

    As an aside, I don't read of anyone mentioning Magnesium, I have started on ionic magnesium as I read that all people healthy or not are deficient in it cause of food productions and it is a very important mineral everyone needs. Just thought I would pass it on as it could help. god bless

  • Yes, I tried magnesium malate for a while as I'd read it might help with fibro (my diagnosis at that time) but stopped as I hadn't noticed any difference. I might add it back into my supplement list some time soon. Thanks! And, yes, it makes so much difference when you can get someone to listen! :-)

  • I've taken B12 once or twice, do either of you find that helpful?

  • Caroline - I can't find Dr P, would you message me with his details?

  • I'll look up his contact details and PM you shortly ...

  • Oh thanks very much x

  • My B12 is very high - I've no idea why. I did start taking it, but when I found out that my level was already very high I stopped.

  • I don't know what mine is so maybe I will wait until I find out! x

  • I've frequently had the urge to pop in to see my (old) GP at my surgery to wave all the new diagnoses of "proper" illnesses that I now have at her - she continually fobbed me off and would not acknowledge that I had real symptoms that needed checking.

    One of them resulted in urgent spinal neck surgery - without it, I would be dead or paralysed. Funny how ibuprofen didn't help, eh.

    She was quite blasé about saying that I couldn't blame my thyroid for all my symptoms, yet wasn't prepared to find out what was wrong. Luckily, my (new) GP has a brain, common sense and a willingness to help.

  • Good grief, beansmummy, that's terrible! Thank goodness you found a good GP. It's actually a physio attached to our GP surgery who's confirmed my diagnosis of neck/upper spine arthritis. I did check with her to make sure this is an "official" diagnosis as I don't want my GP to say it's nonsense! I also asked her if I should have a scan or x-ray but she said there's no need. I just hope my GP doesn't try to get out of this one now!

  • Despite "TV doctors" always telling us to go back to our GPs if we continue to have problems, the reality of being taken seriously if we do is so hard. I think that if we have a label on our notes, that label will stick. How many of us have the "depressed" or "stressed" label? Once it's there, everything ends up being attributed to it. There was a time when I think I could have been wheeled dead into a consultation in a box, and would have been told that I was "depressed".

    I have had fibromyalgia mentioned at a couple of my appointments but, I think, my (nice) GP seems to realise that it is a symptom of something else, and dealing with it appropriately. Interestingly, I recently got a copy of all my notes, and it is not written on there (thankfully).

  • I had similar symptoms on Levothyroxine and T3 no matter what dose i took. The symptoms were directly linked to the tablets, the days i fogot the pain went dow, the days i took the tablets within 3/4 hours the pain and fatigue increased. Im now on NDT Armour, the pain gone nearly completely. The vit d tablets and sunshine help a lot too. Take care, Lizzy

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